The great thing about the CloudCuddle is that we can now spontaneously go away for a weekend with the whole family.

The Koolwijk Family Has Been Enjoying the CloudCuddle for Five Years

Max (9) is one of the first users of a CloudCuddle. His parents bought one about five years ago. His father, Hans Koolwijk, talks about his son's rare condition, the challenges parents face in getting what their family needs, and the convenience of the CloudCuddle.

Max is one of approximately sixty people in the Netherlands with the rare genetic Joubert syndrome. The symptoms vary from person to person but generally lead to developmental delays due to abnormalities in the cerebellum. At home, Max sleeps in a height-adjustable bed with padding — soft lining on the inside of the side panels. He loves reading and is quite good at it, often doing so in bed.

Development is Possible

Because Max learns new skills differently than most people, it takes more time. “That’s the positive side of this condition,” his father says. “With Joubert syndrome, there is always potential for further development.” His parents do everything they can to help Max reach his full potential. “If Max hears a new word often enough, he’ll eventually learn it.” Hans and his wife aim to live life as a family like many others do — including spontaneous vacations as a family of five.

Introduced by Another Family

The Koolwijk family first saw the CloudCuddle through another family — their child also has Joubert syndrome. Thanks to that family’s positive experience, Hans Koolwijk rented a CloudCuddle for two weekends five years ago to try it out. They liked it so much that they decided to buy one themselves.

Reimbursement through the Dutch Social Support Act wasn’t possible at the time, and the health insurer also declined. That was frustrating. “We were eligible, for instance, for a height-adjustable bed with padding at a vacation address in the Netherlands. A healthcare provider like Medipoint or Meyra delivers and sets up the bed — and later picks it up. That can be done up to three times a year. That’s great, of course. But I once calculated the cost of that in a business case and presented it to the insurer — along with a promise to waive our right to this service. The CloudCuddle would be much cheaper, but the insurer wouldn’t go along with it,” Hans explains. “Also, that solution only works in the Netherlands. Again, it’s great that it’s available, but it was disappointing that a more affordable CloudCuddle wasn’t considered.”
The family ended up purchasing the CloudCuddle themselves, with a bit of help from friends and relatives.

Making Life Easier

It’s a common complaint: parents of care-intensive children don’t always get what they really need — even when they know something would improve their lives — while other, less fitting and sometimes more expensive aids are covered. “The beauty of the CloudCuddle is that we can now go away for a weekend on a whim as a family. With the other system, you have to apply six weeks in advance and hope you get approval, that a suitable bed is available in the region, and that it’s allowed at the accommodation. In that sense too, the bed tent has given us a lot of freedom.”

Getting the Hang of It

The family uses the CloudCuddle for about four weeks a year during longer vacations and a few weekends as well. Koolwijk has become quite handy with it. “I unload the car and set up the tent in ten minutes. It’s a bit of work, especially after a long drive, but my wife looks after the kids while I set it up. When we’re leaving, we let Max sleep in it as long as possible, pack everything else first, and then I break it down. At first I was unsure: did I do it right? Are the straps tight? But now it’s easy. Max loves lying right against the tent wall, and we had to build trust that it would be safe.”

To a Fancy Hotel

Max has two younger sisters. Recently, the family stayed overnight at a fancy hotel — a treat from Grandpa. “I had to put the mattresses on the floor, so I’m not sure the hotel would appreciate us mentioning their name,” Koolwijk jokes. “Max slept in the middle in the CloudCuddle, with one sister on each side. That worked really well — a physical boundary between them. The CloudCuddle can be opened on both sides, so they could cuddle, wrestle a bit, or chat at bedtime. It was very cozy for them. For Max, the CloudCuddle is a familiar, comforting space. It defines his world and gives a sense of security — he can’t hurt himself in it.”

Tips for Parents

Does Koolwijk have tips for other parents? “Ask to see the bed tent somewhere or visit a care fair. Try a weekend rental — it was really well organized for us. And in general: don’t let the health insurer or municipality brush you off. Keep pushing, otherwise you often end up paying too much — unnecessarily. We don’t want to be pitied or have tough conversations — we already have enough to manage. I always hope authorities are open to reason. Find out what you’re entitled to and create a business case with cost-benefit analysis and a written promise to waive another service. Few people can argue with that.”

Planting a Seed

Hans also has medical advice. “Not much is known about Joubert syndrome — like many rare diseases — and it presents differently in everyone. Keep believing in potential, keep trying, and stay open to opportunities. Years ago, a doctor said Max would never walk — and now he walks quite well while holding someone’s hand. Who knows how far he’ll go? He won’t become a top athlete, but he’s already making great progress: he now trains with a FrameRunner, a wheeled running frame, and is improving his core strength, fitness, and coordination. Keep planting those metaphorical seeds — what seems impossible might become possible.”

Are you a parent of a child with a disability and want to try out the CloudCuddle for a weekend? You can always request a trial weekend or rent one from CloudCuddle.